Thursday, February 21, 2008

5:54 AM 2/21/2008

So sorry for the late start. As it stands, I was up late last night and as you might expect my mind was still reeling from yesterday's talks. First, you should know that everyone is okay and I am strangely at peace. This will shock you when I share the information that follows. Yesterday was supposed to be about going over the final details of Sydney's biopsy of her arm. We had been led to believe that everybody was okay with the idea and it was a go. However, after discussing the risks of the biopsy and the likelihood of them actually getting viable cells we decided to forgo the procedure. Furthermore, at this point we have decided to go ahead and call her officially relapsed. I know those words will come as a shock to many but I think it is something that we have prepared for mentally.

Here is how we got there. The spot on the MRI is teeny tiny, 3 mm to be exact. The lesion seems to be right at the junction of the inter osseous membrane. That in itself is not a major hurdle but it is also behind a nerve and several vessels. Although not likely, this could leave her arm with some paralysis. Being her predominant side, and her writing arm we really did not like the idea. If that was not enough, this was an incredibly small spot to find. Dr. Gillespie gave us the impression that it would be difficult to find and that hitting the exact spot would be difficult. Finally, if she navigated past all of the nerves and vessels and hit the correct spot she did not seem to have very high confidence that she would be able to obtain viable cells that were not crushed or otherwise damaged.

The other thing that she brought to our attention is what this wasn't. It is not trauma and she felt it was highly unlikely to be any type of infection. Given where it is and how it is acting she found it very unlikely to be infection because she felt that we would be seeing other symptoms as well. She felt that if this were infection this would not be the primary location and we would probably know that it would be going on somewhere else. Finally, there were a lot of things that made this seem cancerous to her. For example, the boney protrusion is consistent with cancer believe it or not. She finally explained that to me in a way that I could understand. Essentially there is a reaction when the bone is being eaten away on the inside that it begins to repair itself on the outside. This is what she believes was happening. All of this left her with what will go down in history as the quacking duck diagnosis. If it walks like a duck and quacks like a duck then it is neuroblastoma.

In the end, she was positive about her conclusion. There is no doubt in Dr. Gillespie's mind that this is cancer. However, I think that is supported by the fact that she thinks her argument is bolstered by the positive marrows from Genzyme. I am curious as to if we threw the marrow findings out if she would be nearly as sure. Regardless, she was convincing enough that we decided not to do the biopsy in favor of calling it an official duck.

The only reason we need a live neuroblastoma cell is for Sydney's eligibility to get into trials. However, she has such a minimal amount of disease it is unlikely that she would have it for long. The fact of the matter is that we would probably treat her the same way regardless of the finding. Look at it this way. If the biopsy of her arm comes back negative there is such a high risk of false negative that we would still have to assume that it is disease. We would. We have to. If it came back positive it would not change how I treated her at all. We would use the exact same plan. In this sense, I just have to ensure that we can get the treatment agents that we want to use on her to treat the disease. The only benefit the arm biopsy buys Sydney is if it is the difference in her qualifying for a trial or not. In short, I would spend the rest of the night talking to doctors all over the country ensuring that I could get the drugs that Sydney needed.
Wow, I could go on for hours. I think a little bit later in the morning I will put a video online to explain much of this. This was not even the tip of the ice berg and I have already written well over a page.

So, anyway, after we met with Dr. Gillespie Dr. Granger came in for a bit to chat. Lynley and I had already begun making plans. Lynley and I are wide open to ideas from our team but I must tell you that we already had a definitive plan in place. We discussed a few options but, at this point, I think we were all in agreement. Dr. Eames had to leave earlier in the afternoon so I have not had the opportunity to go over it in detail with her and I am anxious to do that. I want to hear her opinion and thoughts. She is about the only one that could talk us out of the direction that we are planning to go. I will be chatting with her at some point today. I am sure it will go down in history as another long chat with the Dungan's. Today will be all about scheduling for Sydney. Sadly a port will have to be placed but, in a way, I am glad. She is so hard to hit and I think this will bring her some comfort and it will definitely reduce her anxiety. Other than that we will be ordering a full body CT and coordinating 4 different labs to receive her marrows. We will also be repeating the bone marrow aspiration and biopsy. This time, however, we will be doing them bilaterally, posterior and anterior to increase our sampling. Our goal with this new marrow is to do our best to find disease and we will be sending them to the best labs in the world for finding disease. After doing more research yesterday about Genzyme's technique in neuroblastoma I have even less confidence in their results. They are using an older methodology that is known to be plagued by false positives. I have no intention of sending her marrows back there.

I guess from all of this you can tell which Mark is in charge. I know I will have bad days but right now I have all of the confidence in the world. I feel power. I know exactly what to do and how to do it. I can't guarantee any results but I do have confidence that I am doing the absolute best for Sydney. Given everything that is available there is no doubt in my mind that we are doing the exact right thing for her and her disease. There will be tradeoffs. There are risks but I am comfortable with the plan. Sydney would be too.

You also may note that I got out of this without doing the exact thing that I said I would not do. Here we have Sydney in another relapse situation without definitive proof. I am hoping the new marrows do not clarify the situation. I hope they fail to find real disease wherever they look. But, regardless of whether they do or not, I have the utmost confidence that we are doing exactly what is right for Sydney.

The tough part will be telling Sydney. She will definitely be a part of the decision making process. In fact, you can say the decisions that we have made and the treatment plan that we have crafted are based on her needs.

Wow, there is so much to say and not nearly enough time. I will try and add a video later but I have to run.

I have more purpose today than you can imagine.

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